Feb 26, 2009

Seventy percent of newly diagnosed Alzheimer's disease patients do not receive treatment within a year of diagnosis

I moved to Delray Beach, Florida five years ago to take care of my mother who now suffers from Alzheimer's disease. I didn't know it back then, but my mother was clearly suffering from mild cognitive impairment (MCI) when I arrived on the scene. MCI is often a precursor to Alzheimer's disease and dementia. It is my belief that the early detection of the disease in my mother is the reason why we had a good outcome using Aricept, other medications, and introducing exercise and healthy living into her life.

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In the beginning, I decided to move into my mother's condominium and keep her in her own home. I did this because I concluded after reading some of the literature that moving her into a new environment would be too difficult and disconcerting for her. As a result, I ended up living in an over 55 community with a large fraction of the residence 75 years or older. When it comes to Alzheimer's and dementia I have received an eye opening education.

One by one I have watched friends and acquaintances of my mother fall into dementia. More often than not their children do little or nothing as the disease starts to progress. The children often watch the parent deteriorate until full time care is needed. I also learned that most personal care physicians do not understand Alzheimer's or dementia. Many of them "let it slide". I don't know if it is denial, lack of education, or the way the system works. I know I don't like things the way they are right now and I know we need some education and solutions.

In the beginning, observing the children's lack of action made me very angry. Over time , I came to understand how difficult this situation can be for children that are busy living their own lives and unequipped to understand Alzheimer's and dementia when it strikes. As adults we are not well equipped to become the parents of the parent.

I believe the single biggest reason Alzheimer's sufferers fail to get diagnosed early and get treatment is denial on the part of the children and the personal care doctor.

I know when the diagnosis comes, family and friends of the sufferer often can't believe it, and often refuse to believe the diagnosis. I have discussed this with many caregivers and many agree. It happened in our case--with family and friends.

Alzheimer's and dementia are hard to comprehend. I use the word comprehend with purpose. I recognized the situation with my mother, but it took me one full year to deal with the problem effectively. Keep in mind, this was all I was doing day and night--caring for my mother. It ain't easy. I learned on the job.

I now understand why seventy percent of Alzheimer's patients do not get diagnosed early. Many sufferers don't get diagnosed properly until they need full time care.

This new study -Treatment Algorithms in Alzheimer’s Disease- is an eye opener. I hope it gets some traction. If you are related to someone over 75, you really need to start getting educated now. If you know someone approaching 85, I suggest you start reading the books on Alzheimer's now. Pleases know and try to understand this---one out of every two persons over the age of 85 suffers from Alzheimer's or dementia.

I bet if I told you that you were going to die if you didn't lose 50 pounds you would do something about it. And, I bet if i told you were going to live to be 95 years old you would get serious about Alzheimer's disease.

My mother is 92 and she is still going. We were lucky we got her treated early on. I have seen the opposite and the outcome is too ugly for me to describe.

What to do? I'll let you decide. If you want my opinion just ask.

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Decision Resources, one of the world’s leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that 70.7 percent of newly diagnosed Alzheimer’s disease patients do not receive treatment within a year of being diagnosed. The reasons for this are due to their denial, preference for no drug therapy, concerns about cost or the side-effect and safety risks associated with drug treatment. The new report entitled Treatment Algorithms in Alzheimer’s Disease finds that while surveyed neurologists primarily attribute their decision not to prescribe treatment for newly diagnosed Alzheimer’s disease patients to patient prerogatives, surveyed primary care physicians (PCPs) also cite presence of mild disease as a factor to delay drug treatment.

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  • Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,810 articles with more than 89,500 links on the Internet. Bob resides in Delray Beach, FL.

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    Original content Bob DeMarco, the Alzheimer's Reading Room